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        The Ethical Considerations of Personal Genomics

        As doctors and researchers continue to learn more about the relationships among genes, the environment, and diseases, they are making advances in predicting the likelihood of a person developing certain diseases as well as discovering innovations in the prevention and treatment of diseases. These are enhancing the notion of personalized medicine, which aims to customize an individual's health care by tailoring decisions and treatments based on his or her genetic information. The sequencing of the human genome was the first step in what many hope will be a new era in medicine. As in many medical advances, there are a number of ethical, legal, and social issues involved in personal genomics.

        In this lesson, students explore some of the risks and benefits of gene-based medicine. They look at concerns related to genetic testing (which looks for particular genetic variations) and personal genome sequencing (which sequences the entire genome of an individual). Through videos and discussions, students learn about existing technologies for genetic testing and therapies. They also explore matters such as the emotional consequences of genetic testing, discrimination, and privacy issues. In small groups, students discuss scenarios and then share and analyze related opinions and concerns.

        Lesson Summary

        Overview

        As doctors and researchers continue to learn more about the relationships among genes, the environment, and diseases, they are making advances in predicting the likelihood of a person developing certain diseases as well as discovering innovations in the prevention and treatment of diseases. These are enhancing the notion of personalized medicine, which aims to customize an individual's health care by tailoring decisions and treatments based on his or her genetic information. The sequencing of the human genome was the first step in what many hope will be a new era in medicine. As in many medical advances, there are a number of ethical, legal, and social issues involved in personal genomics.

        In this lesson, students explore some of the risks and benefits of gene-based medicine. They look at concerns related to genetic testing (which looks for particular genetic variations) and personal genome sequencing (which sequences the entire genome of an individual). Through videos and discussions, students learn about existing technologies for genetic testing and therapies. They also explore matters such as the emotional consequences of genetic testing, discrimination, and privacy issues. In small groups, students discuss scenarios and then share and analyze related opinions and concerns.

        Objectives

        • Identify risks and benefits of personal genetic testing
        • Learn about how genetic information can be used to guide treatment
        • Explore some of the ethical, legal, and social issues in personal genomics

        Grade Level: 9–12

        Suggested Time

        • Two class periods

        Media Resources

        Materials

        Before the Lesson

        The Lesson

        Part I: The Ethical Considerations of Personal Genomics

        1. Review how abnormalities in a person's DNA can cause certain traits, including genetic disorders, and increase a person’s risk for some diseases. If students need a significant review, have them read Understanding Gene Testing (PDF) before beginning the lesson. Review with students the following types of genetic disorders and interventions:

        1. Single-gene (Mendelian) disorders (e.g., Huntington’s disease)
        2. Complex traits involving the interaction between many genes and environmental factors (e.g., type 2 diabetes)
        3. Somatic (noninherited) mutations (e.g., some forms of cancer)

        2. Show the first half of the Should We Screen for Cancer Genes? Video. Stop the video after Catherine Elton says that you have a choice and don't have to know this information if you don't want to. As a class, discuss the following:

        1. What is personal genetic testing?
        2. If a genetic test revealed a mutation in the BRCA1 gene, what would that mean?
        3. Why does Catherine Elton use the phrase "the burden of knowing" to describe personal genetic testing?
        4. Would you want to know if you were at risk for a serious disease? Why or why not?

        3. Explain to students that genetic testing usually cannot determine with certainty whether a person will develop particular diseases—it can only look for genetic risk factors that increase the probability of developing these particular diseases. The genetics associated with most diseases are very complex and not yet well understood—many different genes, along with a person's environment, influence the risk for disease. Currently, it is not possible to use genetic testing to reliably predict a person's risk for most diseases. As a class, discuss the following:

        1. How do you think genetic test results would affect you emotionally?
        2. How do you think genetic test results would change how you live your life?
        3. If the test results were not definitive and could only indicate that you are at increased or decreased risk for certain serious conditions, would you want to know your results?
        4. If there were no cure or treatment for a particular disease, how would that affect your desire for a personal genetic test for that disease?

        4. Show the second half of the Should We Screen for Cancer Genes? Video. As a class, discuss the following:

        1. What are actionable genes? What are possible actions a person could take?
        2. What are some benefits to personalized genetic testing and medicine?
        3. Can you think of any downsides to personalized medicine?
        4. What kinds of measures would you be willing to take to prevent a disease that genetic tests reveal you are at increased risk for?

        5. Explain how genetic testing can be used on in vitro embryos to select which ones to transfer to a woman’s uterus. Show The Ethics of Preimplantation Genetic Diagnosis Video. As a class, discuss the following:

        1. Why do you think some prospective parents might want to use PGD?
        2. Do you think people should be able to control human reproduction in this way? Explain your reasoning.
        3. Is there a difference between choosing to screen embryos for diseases and choosing other traits, such as sex?

        6. Explain that in addition to revealing risk factors for potential future health conditions, personal genetic information can also sometimes reveal mutations for currently treatable conditions. Show The Costs and Benefits of Treating Gene Defects Video.

        7. The last part of The Costs and Benefits of Treating Gene Defects Video addresses issues of privacy. As a class, discuss the following:

        1. How might children be stigmatized by genetic information?
        2. What are some other downsides of the genetic testing of children?
        3. Do you think genetic information belongs to the individual, or should parents be allowed to find out their child's genetic information?

        8. Expand the class discussion about personal privacy. Explain that the Genetic Information Nondiscrimination Act (GINA) of 2008 protects against genetic discrimination by employers and health insurance companies. However, life insurance, disability insurance, and long-term care insurance providers are not included. As a class, discuss the following:

        1. How could employers or health insurance companies use your genetic information to discriminate against you?
        2. Can you think of anyone else who might want to know your genetic information? How could they use this information?
        3. Do you think you would volunteer your genetic information for research? Why or why not? What responsibilities do researchers using this information have?
        4. Is genetic information different from other personal health information, including family history of particular conditions?
        5. How can the government help better protect people's genetic information?

        9. Scientists are actively looking for ways to correct for mutated genes and to fix the problems caused by mutations. Genomics is already helping find cures for some genetic diseases, such as particular kinds of cystic fibrosis. At the same time, there is also controversy over the rights to the genes themselves. For example, researchers and companies have been granted patents on gene sequences, which means they control who may test for and use these genes.

        Note: A patent granted by the government gives exclusive rights to the patent holder for a period of time. There are particular requirements that make a discovery patentable, such as novelty, nonobviousness, and not being a law of nature.

        Show From the Cystic Fibrosis Gene to a Drug Video. As a class, discuss the following:

        1. Why do biotechnology companies want patents on genes?
        2. Do you think genes should be allowed to be patented?
        3. (Optional) Discuss recent gene patent cases in the news.

        Check for Understanding

        Have students work in small groups to discuss the issues presented in the Considering the Ethics of Genetic Testing—Group Discussion Scenarios (PDF) worksheet. Assign one scenario to each group and pass out the worksheets. Ask students to discuss the benefits and risks of different choices and to explore some of the ethical, legal, and social issues related to their scenario. Tell students that they may have very different opinions about their scenario—they do not need to come to a consensus on the issues, but they do need to be able to explain any differences of opinion. Have each group prepare a summary of their discussion, including their different viewpoints, to present to the rest of the class.

        For additional curriculum resources on bioethics, check out Exploring Bioethics.

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